My three younger children and I sped along in an Uber with a delightful older women wearing mismatched socks and a messy bun. Sunglasses perched at the top of her forehead and were framed by a mess of skewampus curls. “My sister has autism” she volunteered when I mentioned that my oldest was autistic and that he had stayed home with his dad while the rest of us were headed to a family reunion. Our driver continued: “She requires twenty-four-hour care. We didn’t know this, but she had been having seizures in her sleep for her entire life. These seizures have really affected her brain making life even more difficult for her….my older sister is in charge of her care right now, and I help out as much as I can……its really difficult. But, we love her.” This sweet women gabbed on and on about her personal experiences with autism and her relationships with each member of her family— the dynamics of which were largely influenced by the disabilities of her sister. It was an uplifting, instructive conversation, as I caught a glimpse of the ways in which autism had shaped the beauty of their family dynamics, relationships, and experiences despite the rigor of her sister’s constant care.
A diagnosis of profound autism infiltrates the scaffolding of family structure. Sometimes it feels as if the intensity of the needs of one individual rock that structure, testing its resiliency and strength. This kind of strain can agitate a marriage and create resentment and division in a family. Or it can provide a potent opportunity for each individual in that family to look beyond personal agenda and convenience. To think not only of oneself, but of another. To seek inclusion and understanding. To advocate for. To love. With this kind of familial focus and mentality, a special unity can then weave strength to that family scaffolding. Profound autism becomes a catalyst for change. Whether it creates powerful unity and abundance or acute division and rubble depends on the focus and perspective of that family. I was grateful for the example of this women and the way her family chose an abundant life alongside profound autism.
We arrived at the airport, and popped out of the Uber in breathless anticipation of our adventure together. We were headed to our family cabin on Whidbey Island—a perfect Island tucked away in the Puget Sound. I was going home.
We thanked our driver for her excellent driving and for sharing some of her story with us. This sweet conversation has stayed with me.
This would be the first trip I had ever taken without Isaac after a decade of constant care and vigilance. A decade of helping him walk through his days coping with the unexpected inevitables of life. Of ensuring he ate all the things he needed to eat when he needed to eat them. Of making sure he was cared for at night when sleep evaded him. To be without him was strange… and also, it was sweet. I knew this would be a tender time for Isaac to bond with his dad, and for me to spend undivided time with my other children and extended family.
Jonny, Levi, Kai and I walked on the beach at sunrise and let the tiny crabs tickle our fingers. We tromped through the drizzly forests and made tacos with banana slugs, pine needles, and leaves. I spent undivided time with my siblings and my parents and my children singing, sponging paint on homemade t-shirts, and eating my mother’s sausage and basil soup with homemade bread. For once, I wasn’t required to feel the exhaustion created by the pulls and tugs of constant needs in one place when I was in the other. For once, I didn’t need to be two. It was sweet and yet I deeply missed my son.
My brother, Jacob, is a gifted musician. For every family reunion he composes a song based off of the theme for that reunion. This year’s focus was Jesus Christ as our Light. Jacob rocked the piano and led a plethora of delighted children and adults as we sang:
“He is light! In the morning, in the evening!
He is light! I’m not afraid! I’m not defeated!…
He is light, perfect light shining on me!”
We were all gathered. We were all singing at the top of our lungs. We felt the palpable unity created by music and combined voices and by the message itself. Jesus. As I sang with my family in exuberant gratitude and joy, a wave of grief simultaneously washed over me. My Isaac who has music in him was not there. “He should be here” I thought. A tightness in my chest made its way up to squeeze my throat and then hot tears sprang to my eyes. We were missing someone very special. We were not all here.
My thoughts continued to stagger about… Even if Isaac was here in person….could he really be here enjoying this moment with us? Because of his autism, any number of things could get in the way of his capacity to be with us…or for us to be with him. My reality is that a yearning for him often exists even when he is physically present. I yearn for his ideas to be heard, for his laughter to be shared, for his full capacity as a member of our family to be realized.
I needed to talk to God about this. I needed Him to release a bit of this pain for me. As our songs ended, I snuck upstairs to the bedroom and knelt at the foot of one of the bunkbeds. I spoke freely to God of this ache born of missing my son. He belongs with us. And yet, even when he is with us, parts of him are missing or unreachable. In the middle of my blur of tumbling thoughts and words, a palpable peace wedged it’s way into my heart blocking the string of stinging thoughts and painful yearnings for what was not. An unexpected and vivid image came to my mind of my Isaac at the piano. Of everyone gathered around him as he played. He was laughing and singing and directing us as we united our voices in melody and harmony of his creation. He was bringing us all together. This image of what will be was enough to soothe my significant sorrow.
On this day
I can find connection with a stranger through shared life experience.
I can rejoice in the miracle that family unity can be born and strengthened even and perhaps especially in chronic strain and adversity.
I can find joy in music and crabs and soup and in abundant sweet relationships.
I can recognize His perfect personal ministry to my heart in my time of waiting.
And I can be patient until His miracles finally break the bands of mortal disability for good.
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